Can it be PMR even when blood tests come back as negative? Dr Was sure that was what I had but no confirmation from blood tests

[Hidden]

Hi Bob,

I have had PMR for 19 months. I have been on an initial dose of 30mg of pred twice for the pain. I had a big flare in the illness and had to go back on the big dose again. Both times the rather large dose knocked the pain out in 3 hours. I am now on 7mg and struggle sometimes, feeling achey and tired, but much of the time I'm pretty good.

Yes it can be PMR even though nothing is showing in your tests. I saw a specialist who said blood tests are unreliable and doctors should evaluate the condition from the symptoms and the response to steroids.

Pats

[Hidden in reply to Hidden]

Thanks Pats I am back at GP tomorrow 5th visit in 9 days so will update tomorrow. I cannot believe how debilitating this is I fell like great great nana at the moment rather than nana. Hopefully tomorrow may bring some relief as normal painkillers are not touching it at the moment spending most of my time in a hot bath even though getting in and out is a trial x

[Hidden]

Hi Bobs,

I do hope that your GP makes a possitive decision today. If there are still doubts then I really think the only fair way to diagnose your illness is via a specialist. I would ask for this if I were in your position and having to live with debilitating pain.

Pats.

[Hidden]

Hi guys well have been back to GP who is reluctant to start steroids due to blood results and says I don't meet PMR criteria because I am too young oh if only I felt it. She has made an urgent referral to a rheumatologist and put me on cocodamal naproxen and amytriptaline in the hope that it will give some relief so here is hoping. Part of me is very relieved to not start the steroids but the other part of me was hoping to in the hope that i could be pain free Thank you all for your responses Bobs x

[Hidden]

Hi Bobs,

So pleased for you that you have been referred. I hope you don't have to wait too long. Hope you keep us posted on your progress.

Pats

[Hidden]

Well the medication is helping a little but the stiffness is still there. Tried to go for a walk yesterday but paying for it this morning. Back to GP at end of week to update and will hopefully get appt for rheumatologist. Here's to an easier week for us all x

[Hidden]

Just an update have got appt for rheumatologist on 11th sept which is fantastic as I was referred beg of August. GP has been amazing chasing it for me. Having good and bad days on the current concoction of pain killers and vit D. Getting a bit worried about how I will manage going back to work next week especially after yesterday which was particularly bad. Fingers crossed pain will settle a bit.